User Reviews for Ibrutinib systemic

Also known as: Imbruvica

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Reviews for Ibrutinib

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Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"My dad has CLL. Started taking Imbruvica and a month later developed lesions on his brain, spleen, lungs, and adrenal glands. Lesions were initially thought to be cancerous. A biopsy proved that the lesions were actually a fungus called aspergillosis. This particular type that my dad has is invasive and very often fatal in patients with a compromised immune system. I should’ve done a better job at researching all of the side effects. My main concern was cardiac issues and I don’t recall seeing information about this drug causing fungi before my dad started it. The CLL was managed by chemo infusion pretty well in my opinion; now I feel like this new drug has caused WAY more issues for him and FAST!"

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"My husband has been on Imbruvica since October 2015 and is now down to one pill a day. It is a miracle drug but I just found out today that they are changing from capsules to tablets and tripling the price. Shame on you, greedy Johnson and Johnson."

For Chronic Lymphocytic Leukemia:"Started treatment at VA in Houston about 6 weeks ago....lymph nodes back to normal in 1st 2-1/2 weeks. 5th week of treatment started feeling flu like symptoms....got worse over next 2 weeks. Visited with Hematologist a few days ago.....dropped from 3 pills daily to one pill daily. I bounced back in one day.....lots of energy and no more body aches/pain. Night and day difference in a very short time span."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"I am a female going on 79 years old. I was first diagnosed with CLL in 2013, when my primary doctor noticed a rise in my WBC. I started seeing my present Oncologist in November of 2014. At one of my visits in 2015 he informed me that my WBC had reached 295,000. When I asked him if there was an alternative to chemo, that is when he put me on Imbruvica (3 pills a a day) -that was in August of 2015. I am still taking the same dosage of Imbruvica and my WBC is at 10,000. My visits to my doctor are now six months apart. No side affects."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"Wow...I'm seeing a theme here! My husband began Imbruvica for CLL in June 2017 and we were both telling everyone that it was a miracle drug. Then at 3:00 AM on 12/30/17, he went into sudden cardiac arrest without any warning. It is an absolute miracle that he survived at all and he still has a long recovery ahead. I think this needs to get more coverage based on the number of people who have suddenly died - or almost died!!"

Imbruvica (ibrutinib) for Graft-versus-host disease:"About me: AML, stem cell transplant survivor with GVHD.
How Imbruvica helped: I started imbruvica in 4/17. Prior to taking it I was completely debilitated. After 4 full months on the drug I noted marked improvement. Now I am able to walk, light lifting, and carry out regular activity with much less fatigue and pain. My skin GVHD is not showing any symptoms. It's been a god send!
Side effects: I noticed cramping at about 5 months and back & joint pain at 8 months. The cramping became severe however it is managed well with tonic water. The pain is extreme at times - but so far outweighs the GVHD symptoms."

For Chronic Lymphocytic Leukemia:"I have been taking imbruvica for 1 year. WBC count went from 44,000 to 10,000. Took a year but feeling great with no severe side effects whatsoever. I take 3 each morning. Amazing so far."

For Mantle Cell Lymphoma:"My doctors are saying that it's a miracle; had tennis size ball nodes across chest and close to heart. Oncologist, amazing Dr put me on imbruvica in August ,now all tests ,including catscan don't show anything anymore even hardly the nodes ;yippie I'm happy wow I can't still believe that I hardly had any effects."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"He was doing so well on this treatment. But then he had a sudden cardiac arrest. It took 16 hours to get his heart to stabilize. He was shocked more than 20 times. He remains in the hospital three weeks later. His heart, brain, lungs are damaged. He cannot walk. He is a father of 2 teens and had just celebrated his 47th birthday."

Imbruvica (ibrutinib) for Mantle Cell Lymphoma:"For the first few months, I experienced some diarrhea. Then this condition subsided.
For about a year, I experienced tingling in my hands and feet. Now, after about 15 months, this feeling is almost gone.
Lymphoma had been found in my small intestine. After 15 months of imbruvica use, I have gained weight to a healthy level"

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"I began this medicine in October 2016 (age 62) and saw immediate results. Having lost a sister to Leukemia just 9 months prior to my own treatment I decided to begin with this fairly new FDA approved regimen for line treatment. The results were amazing, lymph nodes began shrinking immediately and with 6 weeks none were palpable! Due to onset a-fib, my oncologist would like me to switch to a clinical trial that is using the next generation of the ibrutinib medication which is showing less side affects, particularly with a-fib. The next generation of this drug is showing less side affects, particularly with a-fib so I am considering."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"My 78 year old mother was taking this and in her third month she had vomiting one day back and neck pain for 3 days, then passed away in her sleep, Didn't get a chance to lower the dose."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"I was prescribed Imbruvica for CLL after being in remission for several years. The past protocols had always worked but where very hard on my system. The side effects weren't as extreme as with other treatments. But Imbruvica did not work at all for me. Taking the drug has made my health & quality of life worse and now having stage 4 CLL my prognosis is grim. I lay in the hospital having numerous transfusions that are nothing more then a bandaid for my very soon eminent death."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"Due to my having a variant GI system (with its own side-effects), my oncologist, in an abundance of caution, started me on Imbruvica 1 capsule in the AM, daily. Literally within days, the SIGNIFICANTLY large lymphs in the front and rear of my neck, disappeared. WOW!
MY WBC's skyrocketed, but that is typically expected due to the mechanisms by which Imbruvica works. Oversimplifying here -- the abnormal (cancerous) cells, congregate in the lymphs. Imbruvica forces those abnormal cells out into the bloodstream, where they can be attacked and starved of the BTK protein, which they need to thrive and propagate. The "dead" abnormal cells are then flushed out of the body.
After 2 months dose upped to 2 capsules daily, and still tolerating well."

Imbruvica (ibrutinib) for Chronic Lymphocytic Leukemia:"My 87 yr old mother took 3 pills in the morning. It lowered her white blood count from 125,000 two
14. 10 is normal. That's the only good thing, I can say about this medication.
She had such severe diarrhea and vomiting , that she could not keep any kind of nutrition or food into her system . The drug almost nearly killed her . Her doctor took her off the medication for two weeks , then have her start taking it again at a lower does. Once again soon as she started taking the medication again , the side effects came back and the doctor decided not to continue with medication. Since her last appointment with her oncologist , her white blood cell count is now 50 .
Next doctor appointment they're going to try a older less effective drug."